Monday, March 27, 2017

MS Research Roundup-HSCT, Ocrevus, MS Blood Test, and More

Longtime Wheelchair Kamikaze readers will remember that I used to post articles comprised of veritable potpourris of MS related info on a fairly regular basis, and that I’d title those posts “Bits and Pieces”. I’ve kind of fallen down on the job in that regard lately, but over the last month or so a bunch of MS research related articles caught my eye, so I figured I compile them here. Came up with the snappy and uber-original title “MS Research Roundup” since any readers new to the blog wouldn’t know what in tarnation I was talking about with the “Bits and Pieces” rigmarole. And what’s the use of a rigmarole if people find it befuddling? A befuddling rigmarole defeats the whole purpose of rigmaroles, and that would put me and my readers in a quandary wrapped in a conundrum. Who the hell needs that?

So, without any further bandying about willy-nilly, here are some items I hope you find of interest:

♦ First up, a bit of self-congratulations. The UK-based website Stairlift Reviews (click here) has named Wheelchair Kamikaze one of the 100 Best Blogs for Disabled People and Carers. Much thanks to them, and I must say they’ve done a really good job compiling the list as there are lots of really, really good blogs on there. Pretty sure Wheelchair Kamikaze got in by way of clerical error.

♦ Ocrevus (ocrelizumab) has its much awaited date with destiny on March 28, as it goes up before the FDA for approval. The new MS drug was originally scheduled for FDA review this past December, but the review was delayed due to manufacturing issues. Ocrevus is up for approval for the treatment of both relapsing MS and progressive MS, and if approved for the latter would be the first drug on the market for this form of the disease. Based on the trial results, I’d say the odds of the FDA giving the drug the go-ahead are excellent, especially for relapsing MS. I’d say Ocrevus has at least a 90% chance of approval for relapsing MS. Probably closer to 95%, as a rejection for this form of the disease would really be a shock given the robust trial results. Things aren’t quite as sure for progressive MS, but I’d still peg the odds of approval here at about 70%. I’d say there is probably a 20% chance that the drug is only approved for progressive patients who have enhancing lesions, and a 10% chance that it is rejected outright, most likely because of the higher cancer rates seen versus placebo in the progressive MS trials. I’ll put up a quick post on these pages after the results of the FDA review are announced on Tuesday.

♦ HSCT, the type of stem cell therapy that first wipes out the immune system using chemotherapy drugs and then reboots it by way of bone marrow transplant, has once again been making waves. The results of two trials were recently released, both showing that the treatment is remarkably effective in completely shutting down the disease for years long periods of time in many patients. In one 24 person trial, comprised exclusively of RRMS patients and sponsored by the National Institutes Of Health, 69% of trial subjects experienced no MS progression, relapses, or central nervous system lesions 5 years after undergoing HSCT (click here). Some of them even regained lost function. Pretty damned impressive.

A second study looked at the long-term results of HSCT using retrospective data gleaned from 25 treatment centers around the world (click here). The study looked at 281 patients treated between 1995 in 2006, and found that just under half of the treated patients showed no sign of progression 5 years after treatment. The patient population looked at in this study was about 70% progressive MS patients (the overwhelming majority of these SPMS), which accounts for its lower rate of efficacy than the smaller NIH sponsored study cited above.

Through some physician friends of mine I was able to get my hands on a copy of the actual paper, which revealed that when the numbers were broken down according to disease subtype, 73% of RRMS patients, 33% of SPMS patients, and less than 20% of PPMS patients were progression free after 5 years. It should be noted that there were very few PPMS patients included in this study (only 24 out of the original 281 trial subjects, and only one PPMS patient was tracked through 5 years). The authors of the study conclude by saying that these results warrant serious further trials of HSCT as first-line or second-line treatment in “patients with highly active relapsing MS… Furthermore, our results raise the question whether HSCT may attenuate the progression of disability in patients with progressive forms of MS, a possibility that is more plausible in patients with MRI evidence of central nervous system inflammatory activity before transplant.” Evidence of “central nervous system inflammatory activity” means enhancing lesions as seen on an MRI, and many other HSCT studies have also concluded that the treatment works best on patients exhibiting these types of lesions.

The results of these 2 studies further strengthen the case for the use of HSCT in MS patients who have enhancing lesions. It is beyond absurd that over 20 years since the testing of HSCT on MS patients started, we still haven’t had an actual placebo-controlled trial on what appears to be a highly effective treatment, perhaps the most effective MS treatment to date. This probably has to do with the fact that the pharmaceutical companies can’t make gazillions of dollars on HSCT, since the drugs used to knock out the immune system are all older drugs that have come off patent. Combine this with the fact that HSCT puts patients into long-term remission for years at a time, during which they have no use for the hyper expensive MS drugs marketed by the pharmaceutical companies, and the reasons why HSCT remains understudied becomes a bit less cloudy. MS patients and those who love them deserve more.

I’m working on getting an interview with a prominent HSCT researcher, so hopefully I’ll be able to bring some “straight from the horse’s mouth” info to Wheelchair Kamikaze sometime soon.

♦ For those interested in the history of multiple sclerosis, here’s really good article entitled “The Story of Multiple Sclerosis And Its Major Milestones” (click here). Lots of fascinating stuff here, including the fact that in the 19th century MS was often treated with bloodletting, leeches to the temple, an all meat diet, arsenic, or injections of silver or gold. Heck, if someone showed me some halfway convincing proof that any of these treatments were of use in treating my non-inflammatory progressive MS, I’d go for it in a heartbeat. Leeches to the temple? Bring. Them. On. Couldn’t be any less effective than all of the other crap I’ve tried in the 14 years since my diagnosis, and at least for a little while I’d have a couple of new pets.

♦ Looks like a blood test that will diagnose MS is going to be released in May, 2017 (click here). Not sure why this hasn’t been major news, since if this is true it’s a really big deal. Multiple sclerosis is notoriously hard to diagnose, with many patients waiting months if not years to get a definitive diagnosis. Damn, I’ve had this thing for at least 14 years and the doctors still aren’t sure if it’s actually MS. According to this article, the blood test is supposed to be 90% accurate. The test looks at a patient’s RNA and genetic profile to make it disease determination. I’ll have to do more poking around on this…

♦ Finally, here’s a New York Times article from 2016 detailing just how misleading some of the prescription drug TV commercials can be (click here). This article focuses on the drug Opdivo, which is targeted at a form of lung cancer. It’s hard to miss the Opdivo commercials here in The States. I’m sure many if not all of the yanks reading this post know exactly which ads I’m talking about. They are the ones that show hearty looking cancer patients staring joyfully up at claims of the drug’s effectiveness projected on the buildings of a big city. Turns out that Opdivo only works in about one in five Stage IV non-small cell lung cancer patients, and in those patients it extends life for about 11 months. Of course, an extra 11 months for a patient dying with lung cancer are priceless, but the ad makes it sound like the drug makes lung cancer just a few notches more serious than a sore throat.

I’m not going to go off on a rant here, I promise, but WHY THE HELL ARE DRUG COMPANIES ALLOWED TO ADVERTISE PRESCRIPTION MEDICATIONS ON TELEVISION?!?! The United States and New Zealand are the only two countries that allow such lunacy, and even the American Medical Association has stated that this practice must be stopped. Maybe if the drug companies stopped spending more on marketing than they do on research (click here) we’d have some drugs for MS that don’t carry with them death as a possible side effect. One thing I’ll say for those leeches to the temples, they didn’t cost $80,000 per year and didn’t cause PML. Of course, they didn’t do anything for MS, so there’s that. But if the leeches were effective, they’d make for some great TV commercials:

Setting: An extreme roller coaster in a giant amusement park. We open with a wide shot of the park, bustling with men so handsome, women so beautiful, and children so adorable that they put to shame the Nazi ideal of human perfection. Amidst the laughter and merriment we find our two thirty-something female protagonists, a stunning redhead and a willowy blonde, energetically climbing into a car on the roller coaster and getting ready for the ride. Both glow with radiant health. The blonde has leeches stuck to her perfect temples, with drops of blood trickling down her almost impossibly high cheekbones.

MS Patient’ s Friend (laughing): “Jane, you’ve got some horrible bloodsucking monsters stuck to your temples!”

MS Patient (cutely giggling): “Oh Susan, don’t be silly. They’re not bloodsucking monsters! They’re Leechabri, my new MS treatment. Last week I couldn’t swallow or get out of bed, but tomorrow I’m climbing Mount Everest!”

The roller coaster then takes off, and the shot widens to follow our heroes as the coaster does a loop the loop. Quick cut to a close-up of our MS patient, laughing hysterically as her leeches flap in the breeze.

And with that image stuck in your mind, I’ll take my leave. I’ll be back with a quick post just as soon as the FDA decision on Ocrevus is announced…


  1. Hello. Thank you for the article. I am circling the drain, and have become increasingly convinced of the same conclusion you've reached - THE DRUG COMPANIES prefer us sick & desperate! MS SUCKS. I was sprawled in my hospital bed (flare up), trying to figure out how to make a meal of jello (!), when a lovely news story about Trump cutting funding to the NIH (researchers - cancer, diabetes, MS) caught my attention. It was almost as exciting as the time I fell at home, just as a commercial for gilenya came on....GEEZ- we all deserve some good news these days. Hopefully on Tuesday....

  2. Marc your writing skills are second to none. I wish I knew a better way to fight pig pharma's influence. Any ideas will be much appreciated.

  3. Once again, the perfect combo of facts and the wry humor of Marc of NY. I await your further brilliance sir!

  4. 'Leeches flapping in the breeze'. That's a great visual. Thee only reason I look through all the MS magazines I receive is to see the silly ads. And to see if there is any real news. I was disappointed HSCT was not mentioned in their new research section. I don't rely on the ads, or just what my neurologist can prescribe for me and was fortunate to get HSCT in Chicago last year. Thank goodness for the internet and people, like you, who disseminate useful information to us all.

  5. Great stuff as usual, what would we do without you? Go Giants!

  6. Love the leeches--let's not forget the helminths! I'm still looking for some. Any news on that front for the next "bunch of stuff" post Marc?

    You'll appreciate this film and article (but may have already seen). Memories of just needing a chair to get around, before and at the same time as other abominations were developing...

  8. This is the first time an article about MS has made me laugh out loud 10 times. "new pets". "leeches flapping in the breeze". Thank you!

  9. Ocrevos is FDA approved. If there was ever a doubt. Pig pharma wins again.

  10. I'll be sure to ask my doctor about Leechabri ;)